The Users’ Perspective: What Integrated Care should look like
At the International Conference on Integrated Care 2014, Robert Johnstone, Trustee of the International Alliance of Patients’ Organisations, gave a talk titled "The Users’ Perspective: What Integrated Care should look like". Having had chronic rheumatoid arthritis since the age of three, he shared his personal story of moving away from being “a very passive recipient of care” to becoming "a self-managing patient”. When he was about fourteen years old, he told his rheumatologist that eating acidic food seemed to make his pain worse. The rheumatologist replied that this was not possible, so because he trusted his doctor he kept eating acidic food and feeling pain. Later in his life, he progressively learned to listen to his own body and to work out what was good and what was bad for him. He gradually reduced his use of medications until he stopped taking them completely while using complementary therapies and focusing on an appropriate diet and exercise. Therefore, he learned that he could self-manage his condition and that clinicians should listen to what he felt and wanted. This led him to become a strong advocate of person-centred care, where he sees a move from asking patients “What is wrong with you?” to “What do you want to do?” as a sign of positive change in the system. During his speech, he recommended involving patients in system change and making individuals feel at the centre of the care process rather than on the receiving end.